Friedreich’s ataxia (FA) is a debilitating, life-shortening, degenerative neuro-muscular disorder. About one in 50,000 people in the United States have Friedreich's ataxia. Onset of symptoms can vary from childhood to adulthood. Childhood onset of FA is usually between the ages of 5 and 15 and tends to be associated with a more rapid progression. Late onset FA (LOFA) can occur anytime during adulthood. The Hook Family has three beautiful daughters, two of which have been diagnosed with FA. In efforts to meet others with FA, and in support of their daughters, the Hook's whipped up an idea that has blossomed into an unforgettable annual summer gathering … FA Woodstock. It is three days of camping, swimming, music, yoga, tye dye, and much more. Those that aren't up for sleeping in tents stay in local area hotels and drive in daily. The first Woodstock started in 2010, and entertained a total of 30 people. Word spread throughout the FA community of good times and friendship to be had at the ranch. In 2013 The Flying H Ranch held their 4th annual Woodstock, and hosted 140 friends from around the country. As always, a good time was had, and lots of memories were made. Friedreich's Ataxia Research Alliance (FARA) medical staff, along with Children's Hospital of Pennsylvania neurologist Dr Dave Lynch, were able to gather samples and information from those affected with FA (and their families) to aid in the research for a cure. Below are some videos from Woodstock and the 2013 Energy Ball, FARA's largest fundraiser. Enjoy!
Our TENTH annual FA Woodstock is an event for those persons affected by Friedreich's Ataxia and their families. It will start on Thursday July 18th at 10:00 am and go thru Saturday July 20th around noon. Then we grab our bikes and head to Channahon, IL for the annual rideATAXIA Chicago on Sunday July 21, 2019.
You will need to register by June 15th, 2019. The fee is $35.00 per person or $70.00 2/more from one family. Also we are not friends with everyone that has FA., so if you know of anybody that has FA that we have not included please feel free to add them.
FARA and Dr. Lynch will be doing their blood draws, cheek swabs, hearing tests, and a few other things at FA Woodstock. This is then sent to Pharmaceutical companies that are working on treatment/cure for FA. This is open to anyone who wants to donate.
Anyone that will be camping you are welcome to come Wednesday late afternoon to set up so that you are ready to join in the fun Thursday morning.
Here are the forms that need to be filled out for each person attending and mailed to: Paula Hook 8592 W 125 S LaPorte, Indiana 46350 or emailed to: firstname.lastname@example.org No later than June 15, 2019.